Touching Lives

Tonight we went to a ValleyCats baseball game with Matthew and David's baseball league.  Because of their disabilities, Matthew and David cannot play little league, they do not have the focus or ability to do so safely.  However, their different needs has made it hard to find a league that would be inclusive of both of them.

As I have looked around over the years, I could find leagues for children with limited physical abilities, those would be great for David, but no league for a child like Matthew who really wants to "play baseball".  He wants to have the rules enforced, he wants to hit the ball, run the bases and feel like he is playing a real game.  However, due to his distractability and inattention, Matthew required what I could not find, a league with adult support, that kept everyone safe and focused, but where the kids had the fun of playing.

This year I found it......an amazing man named Jim Fitzgerald started a program called Sports are For Everyone, SAFE, (http://www.sportsareforeveryone.org/) in 1992.  We arrived for our first baseball game on a Saturday morning in Clifton Park, NY and I was blown away.  There were over 100 kids playing ball!  There were kids who had been playing for years, kids who had never held a bat before.  There were kids hitting off of tees, and kids hitting pitches.  The Little League players  in Clifton Park volunteered their time to help SAFE be a success.  There was a Little League buddy for each SAFE child who needed 1:1 help, and then there were Little League kids helping the more experienced SAFE kids play a game of baseball.

Each Saturday for the past 2 months we went to baseball.  Every Saturday I drove the boys 30 minutes for an hour of baseball.  Each Saturday, I left my heart full, feeling happy and knowing that I had found what we needed for David, but most importantly for Matthew.  He had a group of kids who he was hanging out with. He had a group of kids who loved sports and he was playing baseball!

On the last Saturday they announced that SAFE was invited to go to a Valley Cats baseball game and be on the field for the National Anthem- this was of course met with begging from Matthew that we HAD to get tickets, so I quickly agreed we would attend.  All day today we watched the weather and I knew it would be a long night if we had to skip the game.  Thankfully, the weather held out, and we met the other SAFE families at the ValleyCats game!

As we arrived at the game, Matthew immediately started asking, when can we eat?  What food can we get? As I reminded him we were going to be there a long time and that we would eat, but it would be a while before we did that, he was getting frustrated.  Luckily, there was a nice gentleman next to him, and Matthew quickly started chatting with him.

Looking at Matthew, there are no signs that he is a child with a disability.  Talking to Matthew, you might get a sense that he is a little delayed, but the true intensity of his limitations is not always obvious.  Matthew did his best to talk baseball with this gentleman, and each time Matthew got a little frustrated with me, as I told him we were waiting a little bit to eat, the gentleman seemed to instinctively distract Matthew.  I couldn't tell if the man knew  that Matthew was delayed, and I worried that the man was going to be frustrated with Matthew's incessant talking, but to be truly honest, my ears were enjoying the break from being Matthew's only audience.

Finally, as the game was drawing to a close, the man asked what the SAFE t-shirts were about, and one of the directors of the program filled him in about SAFE.  The man leaned over to tell me that he would leave tonight having had the gift of time with Matthew.....that he would remember nothing of the game, but that he would remember his time with Matthew.  The gentleman told me that he had just retired and was looking for somewhere to volunteer.  He said that he loved coaching baseball for his own sons, and that he was looking for the right group to become involved with.  As Matthew's mom, it is at times hard to remember the gift that Matthew is to people.  His sense of humor, kindness, and gentle, engaging manner can be so warm to people who just meet Matthew.  He is earnest in his caring for others, and he is truly curious about others.  To know that tonight as I worried about him bothering this man, Matthew was having such a positive impact on a stranger, was exactly what I needed to hear.

To round out the evening, as the ValleyCats game ended, and one of the players was walking down the field, all of the kids were cheering and yelling for him, trying to get his attention and to get his autograph.  For some reason, this player just kept on walking.  The kids, being kids, just kept on yelling for him, trying desperately to get his attention for the ever desired autograph.  Finally, as the player just walked by, Matthew announced, "well he must be death!, Matthew speak for "deaf"".  The entire group of adults around us giggled, and I once again teared up, as I realized the bright spot that Matthew had brought to so many people's night out.

You never know who you will sit next do at a ball game, or whose life you will touch, but I can guarantee you one thing, if you take a second to talk to a stranger, you just might change their life, or at least you will get a little giggle!

I wish I had a picture

David and I had a moment...actually it was a good 10-15 minutes and I was with him and he was with me, and we were connected and it was awesome!


Many of you may not know David, so I will give a quick David intro, it is the only way for you to understand how amazing our moment was.

David is quiet, and reserved.  If you are not really working hard at it, you could likely go 20-30 minutes with David and he might not say much if anything at all.  He would be doing a puzzle, or happily listening to music or looking at a book, and he would be totally happy, but he would likely be quiet.

At the pool, David is happy to sit on the sides and just relax.  He enjoys watching the kids play, he enjoys hanging out with the grown ups, but he is usually pretty quiet, and is content to be there.  Our town pool has an awesome splash island area where there are buckets that dump water on your head if you stand under them.  David, Jacob and his buddies all spent some time at the splash island area with me today, and Jacob, his friend and I were taking turns figuring out where to stand so that the water dumped hard on our heads.  Eventually David moved closer and closer to the buckets, but was always far enough away that he avoided getting splashed.

After some time, Jacob and his friend walked away, and David and I were hanging out there together.  I took a misstep and ended up under the bucket and when the water splashed down on my head David gave one of the best belly laughs I have ever heard!  He pointed with excitement and giggled that the water had landed on my head!  He laughed and encouraged me to stand under the bucket again.  Of course, to get such a reaction from David, i am happy to stand under anything especially a bucket of water on a 92 degree hot, humid day!

For over 10 minutes, the water would splash on me and he would laugh.  He would giggle and point and excitedly tell me about the water landing on my head.  His eyes were on mine, and mine were on him, and in a crowded pool complex, we were alone....together......laughing and having fun!

With 3 boys, as a single mom, these moments are so important.  All I could think was, why isn't someone taking a picture.  David's eyes are twinkling, we are sharing a moment together, a moment I want to remember, because his belly laugh was that amazing and he was that excited to be with me in that moment.  And then I realized, that is the picture!  I will remember that moment at the park, where I was present, and he was present and we were alone, being splashed by water and laughing together!

Apparently, David is having just a super cute day, because I just looked outside, and he is using a toddler, plastic lawnmower and pretending to mow the lawn and every few steps he stops and pulls on an imaginary cord as if to start the mower......so cute, such a loving, little boy.  To see the best in David, you sometimes have to remember to stop the world and just watch....I am so glad that today I have allowed the world to stop two times to capture these moments.

musings

Just having lots of random thoughts, and the need to put them all together and hopefully move forward......

1.  Sometimes being a family with children with special needs makes life easier- today we went for a long bike ride, Matthew, Jacob and I.  We were on busy roads, and places that most would not think made sense for neurotypical kids to ride, let alone kids with Matthew's history- but for Matthew it worked.....why?

•  because his body was in motion- he always does better in motion
• because he was surrounded by cars moving, his favorite thing
• because there was no talking just riding
• because at the end an ice cream was calling his name!

2.  When you just meet my family, please remember, I have been doing this a long time.......so, to the new respite worker, rather than telling me, "when I am here, you can attend to the other kids, I will help David", maybe you should assume that the reason my hair isnt dry and my teeth arent brushed is because David is having a rough day.  Maybe I know how to calm him down after 9 years together, and you should watch my example, rather than doing what your textbooks say should work.

I am more than open to learning from others, and have picked up some awesome tricks from teachers, therapists, friends and babysitters, but David is not in a great spot right now, so what will take me 2 minutes to do with him, and create less stress for all of us, is better than you doing "what you learned in a book".

3.  I wish that I knew which Doctor could help David with his cough/tic/noise he makes at night.  It could be so many things.

• it could be him fighting the cold the rest of us are fighting, but his ability to cough is limited due to core muscle weakness so the noise he makes to cough doesnt produce enough to get rid of the phlegm.
• it could be a seizure, although sometimes he does respond to me calling his name, so I dont know if a seizure makes sense
• it could be a tic, if it is, it has to be exhausting him.  Listening to it hurts and exhausts me

Unfortunately, it comes and goes.  So what doctor do we see?  How do I make sure they see it when he does it?

I video taped him doing it last night, and will take it to his next neurology appointment.  Regardless, it is keep him up all night long, making him exhausted and therfore impacting his learning/coping skills.

4.  I don't know how to tell Matthew he has no friends.....the poor kid is under the impression that the world is his friend.  He has planned a huge party for "big kids only" and yet, there is no one to invite.......For the most part, I am a "tell it like it is" kind of mom, this is one thing that is too hard for me to tell......it is the part of being Matthew's mom that is the hardest.  Harder than the tantrums.  Harder than the mood disorder.  Harder than the all of the other challenges.  Childhood should be easy. It is about friends, kickball, playing etc......my boy needs a friend.  

5.  We are coming to the end of a great school year, only to be full of anxiety of transitions.  Matthew wasted half a year in a horrible school placement.  When will I know if he gets to go back to the same teacher for summer school and the fall?  He needs her.  Ok, let's be real.....I need her!  She is a teammate for me.  She is passionate about helping him to be the best matthew he can be.  I hate change.  He hates change....he deserves a year with a great teacher.

David is changing schools.  This should be fine, as I don't think he is too connected to his current placement, but it is just another upcoming period of me training the new person about David, who doesnt say much, and takes years to understand.

I hate the mania

The mania has started....I am hoping it is just a reaction to a decrease in medication and that Matthew will stabilize soon.  I am so full of hope.  The doctor is trying to get him off of seraquel which is a medication that can have some negative side effects and is not known to have helped Matthew much in the past.  That said, we have been decreasing his dosage very, very slowly.  His last decrease was on Friday and on Sunday he had a large tantrum.

I assumed that I might have been the cause of the tantrum.  He wanted to cut tomatoes at the food pantry and I was afraid he was going to cut himself.  They were cherry tomatoes and a large knife and while I tried to coach him through the experience it just was too dangerous between the way he was holding the knife and the slipperiness of the tomato.

He wanted a smaller knife, I was trying to watch David and Jacob and Matthew and we were in the middle of cooking for lots of people.  There were many jobs he could do, and a smaller knife, or really, any knife just wasn't making me comfortable because he wasn't focused.  Sure, had I been in awesome mom mode, I could have done it differently.  However, I was in survival mom mode, and so I worked with him for a few minutes and finally said we would try again at home to learn to cut the tomatos.  He then snuck off to the supply closet and came back with a big knife, and I told him that this was unacceptable.  This led to a long, loud tantrum.

I hoped that it was just a bump in the road.  I figured it was a response to my not so awesome parenting. 

Today I got a call from school that he had been in the quiet room for almost an hour....he had not calmed down and could not ride the bus home and so I needed to come and get him.  He was calm by the time I got there and had basically exhausted himself.  He did fairly well coming back to work with me and just spending time alone.  Things were ok until right before bed, when he got that odd intonation to his voice, the look on his face and the sing song voice.....

i don't know if I hate it because it scares me, or the tone irritates me, or because it is the beginning of what usually becomes intense behaviors.  i do know that I hate it.....I hate that he becomes someone else, he goes somewhere else and it is intense.  I do know that as a parent it is hard to see your child disappear before your eyes. 

I am hoping this is a blip on our radar.  That the tantrums have ended the mania and that tomorrow is a new day and it is all better.  I do know that we have been in a good place for a while.  We have enjoyed bike rides, family time, he has been drumming a lot....things have been good.  I have the inner strength to get through a blip.  I don't want to ......but I will love and support him through it.....I will do my part, if you will do your part and pray that this is a short ride on the roller coaster.  Pray that there aren't too many big ups and downs.

I hate bipolar disorder......with all of my being I hate it!